Genetic testing: would you want to know? – The Killer in Me

The Killer in Me illustrates just how far genetic testing for disease has developed. Testing for conditions caused by mutation in a single gene has been possible for some while, and examples have been considered previously in relation to programmes in the Bitter Inheritance series, e.g. Huntington’s disease (Episode 5) and Gorlin Syndrome (Episode 4). In The Killer in Me, four celebrities agree to undergo pioneering genetic tests for conditions that are under the influence of several different genes and environmental factors, such as diet. It is promised that the battery of tests will indicate their potential risk, i.e. their predisposition, to several common diseases, including heart disease, cancer and Alzheimer’s. The tests are supervised by Paul Jenkins, a Senior Clinical Researcher at Queen Mary’s School of Medicine and the co-founder of the company ‘Genetic Health’. As he explains, “We know the environmental influences that can predispose to disease, now we are able for the first time to start to determine your genetic predisposition to those diseases” (00:01:39).

The decisions about which tests to take, and the celebrities’ responses to the results of those tests, offer insights into the ethical dilemmas posed by screening. GMTV presenter Fiona Philips re-examines her mother’s past medical history, which included both breast cancer and Alzheimer’s which unfortunately led to her death. She reflects on the terrible ordeal her mother suffered for eight years, and wonders what actions she would take if the test presented that she was at high risk of Alzheimer’s (00:02:49-00:05:17 and 00:17:50-00:19:10*).

This section raises one of the first significant ethical issues generated by these new tests. Unlike cancer, heart disease and blood pressure for which lifestyle changes can offset some of the risks revealed by a ‘poor’ test result, Alzheimer’s disease does not provide people with such an option; there is no cure and little preventative action a person could take knowing they are at high risk for this disease. Fiona describes it as a “death sentence”, sentiments shared by others who have late-onset conditions in their family (such as Huntington’s disease, mentioned above).

John Barnes, a former professional footballer, has allowed his fitness to lapse despite both his father and grandfather suffering from heart disease and prostate cancer (00:05:46-00:07:25 and 00:16:20-00:17:50). His wife, the driving force behind him taking the test, believes that the test is relevant not just for John but also the rest of his family, as his lifestyle may contribute to future health problems. For her, “finding out can only be a good thing” (00:17:45)

Despite being adopted, DJ Toby Anstis knows that his biological uncle died of a heart attack at 40 years of age (00:13:40-00:16:16*) and 00:19:15-00:19:53). He feels this knowledge has contributed to greater levels of anxiety, to the extent that he owns a blood pressure monitor for use at home and has become a fitness fanatic. As he puts it, taking the test is “all about the knowledge”, adding later that “knowledge is power” (00:19:40). – if he knows, he can take action.

Andrew Neil confesses to a “work hard, play hard” lifestyle which he suggests is normal for those working in the media (00:31:25-00:34:34). There are some interesting observations about friends who have told him that they wouldn’t take the test based on, he suggests, “fear of finding out things that you can’t do anything about, or finding out really something serious that you did not know you had, and that you’d rather not know” (00:34:14). Neil adds that as a journalist he’d rather know than not know. He sees the DNA tests as a “further weapon in the armour of fending off bad things” (00:34:32).

What people will do with the information they receive is one of the key ethical issues raised in this programme. Fiona Phillips is shown wrestling with whether or not to take the Alzheimer’s test (00:34:53-00:36:52). She talks at length with both Dr Paul Jenkins and Brian Whitley, recognising that a bad test result would “cast an enormous shadow if I thought I was at high risk. I can’t see what positives that would give me at the moment” (00:35:15). Dr Jenkins responds by making Fiona fully aware that it is “very important and the same for all the diseases we look at, is that by knowing that you are at increased genetic risk by no way is transferred or should not be translated to mean you will automatically get the disease”. Dr Jenkins notes surprise at the number of customers of his service who have elected to take this particular test, but says they have done so, generally, so that they get time to put their affairs in order. In the end Fiona decides not to have this specific test, reasoning that “I really can’t see the benefits of knowing that I was high risk. I can see the benefits of knowing that I was no risk or low risk. I’d like to know that, but I don’t want to know that I’m high risk and as I can’t choose I’m going to say no” (00:43:38).

The process of receiving the test results offers interesting insights into the ways different people react in such circumstances (John Barnes, 00:21:30-00:25:48; Toby Anstis, 00:37:10-00:42:55; Andrew Neil, 00:48:07-00:51:28; and Fiona Phillips, 00:51:40-00:56:19). Ironically, given her concerns about knowing bad news regarding Alzheimer’s, Fiona discovers she has a high risk of heart disease and high blood pressure. Unlike Alzheimer’s, however, there are lifestyle interventions (diet, exercise, etc) which can help with counter-acting genetic predispositions.

Following transmission, there were complaints from the British Society for Human Genetics who thought the programme had given too much credence to the validity of the genetic tests shown. It is certainly important with testing for these more complex, multi-gene conditions to stress that the results are not definite yes/no answers. Unlike single-gene diseases, where having the mutant gene often means that a disease state is an inevitable consequence, complex diseases are more to do with a sliding scale of probabilities. The programme certainly does this; Dr Jenkins uses a ‘traffic-light’ system to indicate degree of risk and is keen to stress to the celebrities that the link is indicative not definite (e.g. 00:25:20, where he emphasises to John Barnes that a higher-than-average risk for Alzheimer’s “in no way means you will get it”).

Having said that, there are criticisms that could be levelled at the programme. No consideration seems to have been given to the genetic consequences for blood relatives, especially children, of those undergoing the tests (the wife of John Barnes does allude to the relevance for his daughters, but this seems to be more in terms of having a healthy dad around rather than for their own genetic well-being). Further, although the sliding-scale nature of genetic risk was explained, this is not the same as justifying scientifically how that scale was formulated in the first place.

Despite these reservations, we were pleasantly surprised by the educational potential of the programme, and can see it being used as a vehicle for discussing the pros and cons of genetic testing. If time allows, there would be merit in watching the full programme. Use of particular clips would save time in a lesson or tutorial, in which case it would probably be most beneficial to compare the attitude and the decisions made by John Barnes and Fiona Phillips.

The Killer in Me is 60 mins in length (including advert breaks) and was first broadcast on ITV1 at 9 pm, November 8th 2007. Copies are available to BUFVC members for educational use (TRILT identifier: 00741475).

* timings are approximate, and after 00:09:30 are inclusive of advertisement breaks

Update (2nd April 2015): This programme is now available to students and staff at subscribing institutions via Box of Broadcasts.

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3 Responses to Genetic testing: would you want to know? – The Killer in Me

[…] lurking there”. Some of the issues raised here mirror those found in the ITV1 broadcast The Killer in Me, which illustrated particularly well the anguish associated with having such tests and the way […]